Apr 18, 2014 0 Share

Starting the Journey

Child walking into a field.

Over the last year or so I’ve talked to parents who have children that have been newly diagnosed with ASD. And as expected, many of them have questions and uncertainty about what the future holds for their child and for that matter, the family as a whole. While some preparation for the future is good, looking too far ahead can lead to a lot of unwanted and needless anxiety.   

            “How do I face this fear about what lies ahead for us?”

            “How do I overcome my depression about my child being diagnosed with ASD?”

            “Will my child ever be able to have quality of life?”               

            “Will my child ever be able to live on his own?”

            “How will I know who I can or cannot trust to help?”

These are just a few of the questions I often hear.

One of the things that helped me the most when Cody was diagnosed was learning to take one day at a time as much as possible. I knew enough about autism at the time to know that one day could be very different from the next and major progress was not going to take place overnight. It was going to take a lot of hard work and dedication, and there would be many challenges along the way. But being afraid of them wasn’t going to accomplish anything. Facing them head-on was the only logical option for me.

Depression about Cody’s diagnosis was never really an obstacle for me. I didn’t feel like I had the time for it, for one thing. However, I was quickly frustrated with the lack of resources in our area. There were many phone calls and discussions with teachers and program administrators, and disputes with staff members regarding goals and appropriate curriculum. But in the long run, we have found ourselves winning the battle.

I also feel it is paramount for parents and caregivers to understand that, like all neurotypical people, each person with ASD is different from the next. Autism does not negate having a unique personality, ergo the need for individually-oriented goals and curricula. Recognizing Cody’s needs as an individual was critical for us in providing the right tools to help him progress and critical for Cody to be able to learn ways to add enrichment to his own life.

While there may be some interventions that work well right away, it is highly unlikely that everything will go off without a hitch. There should be an expectation among parents and caregivers that there will be much trial and error involved in the therapeutic and educational processes of meeting the individual needs of their child.

Accepting from the beginning that Cody may need assistance over lifespan was crucial in dealing with whatever challenges Cody’s autism threw our way. That doesn’t mean we relinquished our hope that one day Cody could become self-sufficient enough to lead a productive life. Even though he is now 27 years old and is a long way from reaching that goal, we have seen him make so much progress that we still believe that possibility may one day be a reality. He’s reached many milestones. He just didn’t do it in the same time frame as his neurotypical peers. But he did reach them.

Lastly, finding doctors, teachers, and therapists can be a trying experience. And trust issues are common among parents just embarking on this journey. I found that doing lots of research about medications, therapies and programs on my own gave me the proper information to ask service providers key questions and also the ammunition to stand my ground if there was anything with which I disagreed.

There is no magic pill that will cure ASD. There is no quick fix. That’s why Bill and I sought to focus on the small victories and rejoice in every one of them. Knowing what triggers a meltdown and which methods work best to minimize it empower us immensely. Making note of what motivates Cody and looking for new and different ways to teach him skills he needs to master has been challenging, but in the end we have learned so much. And we have been so richly blessed for it.